Briefing at Congress: The Changing Face of HIV/AIDS in America

Thank you for this opportunity to
present a testimony on behalf of thousands of my peers who are aging with HIV.

My name is Nelson Vergel. I am the
founder of Program for Wellness Restoration, a national peer driven and
operated non-profit organization based in Houston whose mission is to improve
health resilience and self-advocacy of people living and aging with HIV via wellness programs, national lectures and online education. 
Despite my seemingly healthy appearance, I find myself at 54 years of
age having lived with HIV for almost 30 years. I have spent most of that time
trying to successfully control my virus despite having built up a lot of
multidrug resistance.  In fact, my HIV
virus has reached undetectable blood levels only 3 years ago thanks to the use
of investigational medications yet to be approved by the FDA.

 I’m also currently undergoing chemotherapy for
aggressive B cell lymphoma, one of the most common cancers in people aging with
HIV. I am actually glad to be here not only because of the importance of this
issue but also because I was able to convince my oncologist to give me a week
off chemotherapy to come to speak in front of you.

 I never thought that I would survive to grow
old.  Like most long term survivors, I am
living proof of the great success of federal investment in research and treatment
of HIV.  In fact, this success is one of
the reasons that by the year 2015 more than 50 % of people living with HIV will
be over the age of 50. In several US cities that is already the case.

In my national travels lecturing
during the past 20 years I have seen a shift from fear of death to fear of
disability while we age with HIV.  Most
aging HIV+ people that I come in contact with are dealing with health issues
earlier than the general aging population. 
Some people have developed lipodystrophy related body disfigurement,
extreme fatigue, neuropathy pain, frailty and other health issues that have
made it impossible for them to hold a full time job.  These circumstances have pushed many into
permanent disability with small incomes that put them under the poverty
levels.  Others who are doing better want
to go back to work and regain their productive place in society and to apply skills
they have learned before they went on disability. Unfortunately, funding cuts
have left very few support and case management programs to help people aging
with HIV to remain productive and relevant while preserving full independence.
Most HIV+ people do not know how to navigate the few programs that may be out
there.

Clinical studies and our own community
surveys presented in HIV conferences show that many of the survivors of the
first two decades of this epidemic are experiencing premature bone loss and
metabolic problems, body changes, frailty, cardiovascular disease, cancers, and
cognitive dysfunction. In fact, some studies show an acceleration of 15 years
in our aging process compared to people who are not HIV-infected.  Much of that acceleration has been linked to
toxicities and increased inflammation even in people with undetectable HIV viral
load.   This relatively early onset of issues provides
researchers an opportunity to study aging in an accelerated model compared to
traditional non-HIV studies.  It is also
worth emphasizing that HIV/aging research offers an opportunity to better
understand how infection-related wear and tear on the immune system contributes
to aging-related conditions among HIV-negative people. These studies could be
enrolled quickly as patients living with HIV are eagerly interested in
volunteering in interventional aging studies that could have benefits beyond
HIV.

Due to federal investment, academic
and private innovation, we now have 8 first line regimens that can treat
someone newly infected with HIV. But for some people like me who have been
infected for many years, aging is arriving with fears of long term
survival.  As many of us volunteered for
clinical studies that helped get HIV drugs approved, our virus developed accumulated
multidrug resistance due to suboptimal regimens used in those studies. We still
need early access for combinations of new drugs with new HIV targets while we
eagerly wait for a cure. 

In my role as a community educator
and research activist, I am happy to see emerging studies related to aging with
HIV.  But most are observational in
nature. Your support of investment in interventional aging studies could
generate therapies that could not only help 32 million people living with HIV
but also the aging people in this room and around the world. That is why it is
important not only maintain, but increase funding for NIH-targeted research on
HIV and aging consistent with the priorities outlined by a report written by a
NIH-convened work group, on which ACRIA participated.

My community strongly urges
congress to fully support funding the Ryan White CARE Act (RW) to at least the level
requested by the President. RW is vital for many reasons, but notably the
median age for older adults with HIV is age 58, i.e., not yet eligible for
Medicare and other services funded through the Administration on Aging via
OAA-funded programs. Many, if not most, rely on RW funded programs for a host
of services, including RW’s AIDS Drug Assistance Program for their meds. And
with many states choosing not to expand Medicaid under the Affordable Care Act,
RW will remain vitally important as a key source of payment for necessary
services for this population.

Like everyone is this room, people
with HIV want to age healthy and to enjoy our improved survival.  We want our experiences with accelerated
aging to be used for the benefit of mankind.

Thank you 

Nelson